Bertie and Alison’s Story

Bertie was diagnosed with a rare muscle wasting disease two years ago. He uses a wheelchair and it is so frustrating when he can’t join in because his appetite for fun and sport is huge. We were beyond excited to hear about Parallel London’s accessible push/run. It will be Bertie’s first ‘big event’ and at last he’ll be at the heart of it all and not on the sidelines.

We’ll be fundraising for Bertie’s Buccaneers, a Family Fund of Muscular Dystrophy UK, supporting the urgent Ullrich CMD appeal. We really hope Bertie will be able to do the challenge on a trike if we are able organise one in time. I’ll be on hand to steer and push. But if not I’ll be pushing him in his wheelchair. It’s brilliant for both of us that we can take part together.

His big brother and sister have gained lots of self-confidence through trying out lots of different activities (most recently archery) and we would really like to give Bertie that same opportunity. Aged five, Bertie thinks it’s completely natural that he should be able to join in any sport on his own terms. In his mind he is an Olympian. We want to keep it that way and as a family inspire other families with disabled children to get out there together, being seen and being heard.

Bertie’s physiotherapist has helped to make P.E. lessons at his school more accessible for him. He also loves being in the swimming pool with his siblings and has had a few pony riding tasters over the past year too and loved them. He is on the waiting list for RDA riding at a local stable. His brother and sister have learned to ski this year at the ChillFactore in Manchester, which just happens to be the home of Disability SnowSport, so Bertie has now added this to his list.

Due to Bertie’s muscular dystrophy, it has been really difficult for him to walk, never mind run or kick a ball. He never gives up though and after years of trying, just the other week he managed to have a kick-about in the garden. Yes he fell over a lot on the grass but when we picked him up he just set off again undeterred. He has such a determined spirit! I wish I could bottle it and sell it. We could raise so much money for Bertie’s Buccaneers and find a cure.”